LUPUS/APS Committee, Dutch Patient Association NVLE, Utrecht, The Netherlands
Lupus Europe, Romford, UK.
Lupus Sci Med. 2021 Mar;8(1). doi: 10.1136/lupus-2021-000478.
Use of hydroxychloroquine (HCQ) is common in patients with lupus erythematosus. Long-term use (ie, ≥5 years) and high-dose HCQ (ie, >5 mg/kg/day) are both risk factors for developing HCQ retinopathy. Advances in our understanding of HCQ retinopathy have led to changes in the recommendations for HCQ dosing and retinopathy screening. The latest EULAR guidelines for the management of SLE recommend a maximum HCQ dose of 5 mg/kg/day and ophthalmological screening at baseline and annually after 5 years of HCQ treatment.
This study aimed to assess whether the EULAR guidelines are affecting HCQ prescription patterns and screening frequencies in Europe. Furthermore, we inventoried adherence to HCQ.
The online questionnaire was completed by 2936 patients with systemic, cutaneous or juvenile lupus from 33 countries. The majority were female (86.5%) and diagnosed with SLE (81.2%). Among those taking HCQ, the median HCQ dose reported was 4.26 mg/kg/day. More than one-third of respondents (36.8%) exceeded the recommended maximal HCQ dose of 5 mg/kg/day. Baseline ophthalmological screening had been done in 857 out of 1017 respondents diagnosed in the past 10 years (84.3%). Of patients using HCQ ≥5 years, 69.2% reported yearly retinopathy screening. Lastly, 17.3% of patients reported that they skipped HCQ once a week or more often.
The results of our study demonstrate that higher than recommended dosages of HCQ are prescribed to more than one-third of patients with lupus in Europe. Recent recommendations regarding screening for retinopathy are incompletely implemented.
羟氯喹（HCQ）在红斑狼疮患者中应用广泛。长期使用（即≥5 年）和高剂量 HCQ（即>5mg/kg/天）均是 HCQ 视网膜病变的危险因素。我们对 HCQ 视网膜病变认识的提高导致 HCQ 剂量和视网膜病变筛查建议发生了变化。最近的 EULAR 狼疮管理指南建议 HCQ 最大剂量为 5mg/kg/天，并在基线和使用 HCQ 5 年后每年进行眼科筛查。
本研究旨在评估 EULAR 指南是否正在影响欧洲 HCQ 的处方模式和筛查频率。此外，我们还调查了 HCQ 的使用依从性。
该在线问卷由来自 33 个国家的 2936 例系统性、皮肤性或青少年狼疮患者完成。大多数患者为女性（86.5%），诊断为 SLE（81.2%）。在服用 HCQ 的患者中，报告的 HCQ 剂量中位数为 4.26mg/kg/天。超过三分之一的受访者（36.8%）超过了推荐的最大 HCQ 剂量 5mg/kg/天。在过去 10 年内被诊断为狼疮的 1017 名受访者中，有 857 人（84.3%）进行了基线眼科筛查。在使用 HCQ≥5 年的患者中，69.2%报告每年进行一次视网膜病变筛查。最后，17.3%的患者报告他们每周或更频繁地跳过 HCQ。
我们的研究结果表明，欧洲狼疮患者中超过三分之一的患者服用的 HCQ 剂量高于推荐剂量。最近关于视网膜病变筛查的建议并未得到完全执行。
